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Parent Advocacy Initiatives

PLGA Families Lobby and Senate Appropriations Shines Spotlight

In the spring of 2012, PLGA famlies from across the country worked together to lobby their state senators and congressmen/women to support the inclusion of PLGA brain tumors in the 2012 NIH Appropriations Bill.  Their efforts were met with success.  On June 14th, 2012, the Senate Appropriations Committee approved their version of the Labor/HHS funding legislation which includes language directing the NIH to form a special emphasis panel for PLGAs. This progress is truly a BREAKTHROUGH for scientific research on PLGA.

The NIH's panel will present results from the panel before the end of the 2013 fiscal year. We are optimistic that their efforts will help further direct research efforts and inspire scientists and medical experts around the country to turn their attention to PLGA and finding more effective treatments and a cure.  Language for the NIH can be seen here.

 

NIH Responded to Research Request

In response to the PLGA parent advocacy lobbying effort in late 2007 (see below), The Department of Health and Human Services, (HHS), The National Institutes of Health (NIH) along with National Cancer Institute (NCI), National Institute of Neurological Disorders and Stroke (NINDS), National Institute of Biomedical Imaging and Bioengineering (NBIBIB), and the Office of Rare Diseases (ORD) have developed a comprehensive research plan to focus on children’s brain tumors, with the goal of identifying alternative, safer and more effective treatments.
 
The PLGA Foundation appreciates your acknowledgment of this rare disease, the most common forms of brain tumors in children, and looks forward to collaborative efforts to find new treatments and a cure for those PLGA children who face an uncertain, high risk future.
 

Keeping an Eye on NCI's Funds from the Federal Stimulus Package

According to NCI Director, Dr. John Niederhuber, in 2009, the $1.3 billion provided from the stimulus package is a 'once in a life time opportunity' for the NCI.  The agency will broaden a project to study the DNA of tumors to try to find better treatments.  
 
While these funds will target tumors, OUR challenge is clear...it has been far too long that children's brain tumors have been lowest priority in cancer research funding.  We need to be sure that our voices are heard so that DNA research for PLGA is NOW, finally, put on the fast track.

Heartfelt Lobbying from PLGA Families Impacts 2008 NIH Appropriations Bill

Families associated with PLGA Foundation and the fightjpa.org website united from across the country to support an initiative to lobby both the House and Senate to include in their 2008 Appropriations Bill to the NIH a request to create a comprehensive research plan focused on JPA and PLGA. 

With the NIH's spotlight on the disease there should be increased attention in the research community and leveraging of synergies between Institutes and Clinics across the country. From the bill:

"Children's Brain Tumors - Brain tumors are the most common solid tumor type for children, and the leading cause of pediatric solid tissue cancer deaths. The most common forms of childhood brain tumors, affecting patients ages 0 to 19, are Juvenile Pilocytic Astrocytomas [JPA] and other Pediatric Low Grade Astrocytomas [PLGA]. Because current treatments (surgery, chemotherapy and radiotherapy) are invasive, toxic, and cause debilitating side effects/impairments, the Committee strongly urges the NCI, NINDS, NIBIB, and ORD to develop a comprehensive research plan, including specific timeframes, to focus on children's brain tumors, with the goal of identifying alternative, safer and more effective treatments, as well as a cure. The Committee further encourages the NIH to achieve this objective by targeting basic and clinical research, accelerating the enhancement of the Institutes' cancer research portfolios, creating research priorities with a sequential agenda and timeline, and facilitating the coordination and collaboration of organizations (both public and private) already funding related research initiatives."

To see the full language please go to PLGA Senate/House Appropriations Bill Language (scroll half way down the page and look for "Children's Brain Tumor" title). 

 

Note: A Kids' Brain Tumor Cure Foundation welcomes new families to help advocate for new research funding for the most common forms of children's brain tumors.  Please contact Amy Weinstein at 914-762-3494 or email amy@fightplga.org if you wish to share your child's story.   Your story CAN make a difference in our being 'heard' by our local and federal government officials. 



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